Alzheimer’s takes ultimate toll on emotional boundaries

How to get help

The Alzheimer’s Association has a helpline staffed 24 hours a day, seven days a week. Call (800) 272.3900.

WEST ALLIS, Wis. – It isn’t at all clear the time, or even the day, that Paul and Virginia Wilcox died, seated beside each other in the silver Ford Econoline he had parked in their driveway.

On May 4, around dinnertime, Paul called their neighbor and longtime friend, Jeanine Sonntag. He told her that Virginia, his wife of nearly 48 years, once again couldn’t remember who he was.

He handed the phone to Virginia.

“I told her, ‘That’s Paul. He’s your husband,’ ” Jeanine said.

Virginia also was confused about the time of day. This man wanted to take her to dinner. But she didn’t recall having lunch.

“You had lunch,” Jeanine told her. “Time for supper.”

Jeanine and Virginia had much in common. Jeanine also got married in 1968. For many years, she and Virginia taught at the same elementary school in Wauwatosa, Wisconsin. They happened to buy homes in the same West Allis neighborhood.

But Jeanine had grandchildren and another on the way. Paul and Virginia had no children. No family nearby.

A few years ago, when Virginia’s Alzheimer’s disease became more pronounced, Jeanine, knowing Paul needed a break from his caregiving duties, began to have lunch with Virginia every Thursday and Friday.

Though Virginia always still recognized Jeanine, she more and more frequently failed to recognize Paul.

“She would tell me that men were coming into her house,” Jeanine said.

“I asked her if she was afraid of them. She said, ‘No, no, they’re all very nice. They do everything I ask.’ ”

That Wednesday, several hours after his first call, Paul phoned Jeanine again. He told her not to come for lunch on Thursday, that Virginia had made other plans.

A silver tsunami

On Jan. 1, America’s baby boomers began turning 70 at a rate of 10,000 a day, a silver tsunami that is expected to continue, day after day, for the next 19 years.

More than 5 million Americans now have Alzheimer’s, the most common form of elderly dementia. Alzheimer’s destroys memory and other mental functions and, eventually, the ability to carry out the simplest tasks.

There is, at this time, no known cure for Alzheimer’s. No known way to slow its course. Without treatment, those with Alzheimer’s will either die with the disease or they will die because of it.

The prevalence of Alzheimer’s among baby boomers is expected to explode by midcentury.

The Alzheimer’s Association projects that 10 million baby boomers will develop Alzheimer’s. Other studies project nearly three times that number. Of those who reach the age of 85, nearly one in two will get it.

Not only will there be more people with Alzheimer’s, a greater percentage of those people will live into the severest stages of the disease.

Alzheimer’s is the sixth leading cause of death in the United States. It kills more people than breast and prostate cancer combined.

Alzheimer’s is not merely a disease of the brain. As memories fade, as words become impossible to find, as feelings dissolve, those who share those memories, cherish those words, embrace those feelings, suffer.

The overwhelming majority of help provided to people with Alzheimer’s and other dementia, according to a recent report by the Alzheimer’s Association, comes from people like Paul Wilcox and Jeanine Sonntag: family members, friends and other unpaid caregivers.

The association’s report estimates that these people provided 18.1 billion hours of unpaid care in 2015. At $12.25 an hour, the economic value of that care is more than $221 billion. That’s more than 13 times the revenue Starbucks generated in 2014.

The physical and emotional cost to informal caregivers, according to the report, is vast:

– Nearly three out of five caregivers rated their stress as high or very high.

– About 40 percent suffer from depression.

– More than 40 percent polled in 2014 said they alone provided unpaid care.

– The chronic stress of caregiving is linked to heart disease and impaired kidney function.

– The health of people with dementia may be linked to their caregivers’ risk of dying. In one study, the caregivers of hospitalized spouses with dementia were more likely to die the following year than those whose hospitalized spouses did not have dementia.

‘My Virginia’

Samantha Peaslee, a waiter at the Forum restaurant in Greenfield, Wisconsin, began to worry. She had phoned Paul on Thursday, and – atypically – he didn’t return her call.

Virginia – who at one time was an avid gardener, loved music and ballet, and even made her own clothes – had become unable to even dress herself. She no longer cooked. Paul was a welder. He loved to work on cars. And he didn’t cook.

So the couple began to eat most of their meals in restaurants. The Forum was a favorite.

On Tuesdays, Samantha said, Paul usually took Virginia to have her hair done and her nails polished. Then they would have lunch at the Forum.

“He would bring in ‘his Virginia,’ ” Samantha said.

“ ‘Look at her,’ he’d say. ‘Look how cute she is. How beautiful is she?’ ”

“He would order whatever she wanted,” Samantha said. “And they would share. He always made sure she had the best side of the plate.”

Staff at the Forum became the Wilcoxes’ informal support group, Samantha said. And Paul treated them like family. Two years ago, she said, Paul was diagnosed with prostate cancer. The staff looked after him during his surgery and chemotherapy.

Paul was usually full of energy, quick with a joke followed by a booming laugh.

But in the last few weeks, Paul seemed to move a little slower. His stride had stiffened. And the look on Paul’s face when Virginia didn’t recognize him, that tore at Samantha.

“It broke his heart into pieces,” she said. “It devastated him. The love of his life didn’t know who he was. He was sitting beside her. But she wasn’t there.”

Then their cat, Henry, had to be euthanized.

It was Virginia who loved cats. The Wilcoxs always had a cat. In the garden Paul made for Virginia in the front of their house is an iron cat leaping toward a bird.

The day they euthanized Henry, Paul and Virginia came to the Forum for lunch.

Paul wept.

Virginia appeared unmoved.

‘Virginia and I are terminating’

Samantha called Paul again on Friday, but he still didn’t return her call. She decided that if she didn’t hear from him by the end of her shift, she would drive to the Wilcox home and check on them.

By then, Jeanine was already on her way to pick up Virginia for their usual Friday lunch.

About 11 a.m., Jeanine parked her car in the Wilcoxs’ driveway, behind Paul’s bright red Cadillac DeVille. Paul had turned the entire front yard of the house into a garden: roses, peonies and tulips. In the center of the garden stood a statue of a fat dancing Buddha. The garden was just beginning to bloom and the wind chimes near the front door tinkled.

Jeanine went into the house and called for Virginia. No reply. She called into the basement. No reply. She went out the door and toward the garage, where Paul ran his welding business. She walked past the Wilcoxs’ van without thinking much about it, and was about to knock on a door on the side of the garage, when she glanced toward the van and noticed the top of someone’s head on the passenger’s side.

Immediately, Jeanine said, everything snapped into focus.

She recalled thinking: “Oh, no.”

She walked around the back of the van and looked into the driver’s side window. There was Paul. On the dashboard facing the windshield was a sign that said: “Poison – Danger Carbon Monoxide Gas.”

Jeanine did not linger to examine the van, but a medical examiner’s report provides the details:

The van faced west, toward what would have been the setting sun. Paul and Virginia’s seats were slightly reclined. Both had neck pillows and something to drink nearby.

Investigators found an uncapped bottle of Zaleplon, a sedative, on the van’s console and another bottle of Zaleplon on the floor. On the floor in the rear of the van was a charcoal grill. It contained burnt briquettes, ashen in color.

In the house, investigators found a note, typed on business stationery and signed by Paul:

“I am sorry to leave like this but the rules say I can not tell you, Virginia and I are terminating.”

Paul said he was running out of strength and capacity and that Virginia did not want to die in institutional care. He and Virginia, Paul said, had for years planned to leave together. He was 71, she was 72.

“I think Virginia and I have mentioned this to you,” Paul wrote. “Virginia and I decided to do this today at supper.”

‘What else do you do?’

Jeanine stayed beside her car as the police came. They blocked off the street, questioned her. Everything began to feel slightly unreal, she said.

“I was feeling sorrow,” she said. “Anger. I was mad they did it. I was mad that I found them. I was mad at myself for not stopping it, for not knowing it. And then there was disbelief. I just didn’t want it to be true.”

Samantha said she, too, was saddened by the loss of her friends. But, she said, what Paul did made sense to her. She had no doubt Paul acted out of love.

“What else?” she asked. “What else do you do?”

When told of Paul and Virginia’s death, Tom Hlavacek, the executive director of the Alzheimer’s Association of Southeastern Wisconsin, took a deep breath.

“This,” he said, “is what keeps us up at night.”

The despair Paul must have felt is not uncommon among caregivers, he said.

“It’s heart-rending and terribly difficult. You need to get help. For the person you’re caring for and for yourself, get help. It can mean the difference between life and death,” he said.